Project Summary

Background: People living with autoimmune conditions have nearly twice the risk of acquiring severe vaccine-preventable infections with higher risk of serious complications, making this a high-priority vaccination group. Risk is increased by the underlying immune dysfunction and immunomodulatory therapies used in this population, yet patient vaccination uptake remains low despite evidence demonstrating vaccine safety and efficacy.

Proposed Solution to the Problem: The four Patient-Powered Research Networks that constitute the Autoimmune Research Collaborative will convene a multi-stakeholder steering committee and coalition that includes patients, caregivers, researchers, physicians and other clinicians, health system and health plan leaders, and representatives from regulatory, industry, and public health entities to identify and prioritize patient-centered outcomes research in this area. Specifically, research to examine and optimize uptake of pneumonia, shingles, flu, and COVID-19 vaccination among adults living with autoimmune conditions.

Objectives: The objective is to build a multi-stakeholder alliance with whom the team can create a strategic plan and research agenda to facilitate PCOR/CER of vaccine uptake among US adults living with autoimmune conditions.

Activities: Monthly steering committee calls and one to two larger stakeholder alliance meetings. 

Projected Outcomes and Outputs: The final deliverable of this project will be a research agenda, based on stakeholder input, to implement future projects that improve the understanding and effectiveness of initiatives that increase vaccine uptake among adults with autoimmune conditions. 

Patient and Stakeholder Engagement Plan and Project Collaborators: 
This stakeholder convening project builds on the work of the Autoimmune Research Collaborative, which is comprised of four Patient-Powered Research Networks: ArthritisPower, IBD Partners, iConquerMS, and the Vasculitis Patient-Powered Research Network. These networks are collaborations of patient organizations and affiliated academic institutions. The networks involved will engage relevant stakeholders for this project. 

Project Information

Shilpa Venkatachalam, MA, MPH, PHD
W. Benjamin Nowell, MSW, PhD
Global Healthy Living Foundation

Key Dates

June 2022


Project Status
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Last updated: April 3, 2024